Rapid technological advances, the establishment of large-scale biobanks, and the exchange of data across international boundaries raise a variety of questions for regulators struggling with the problem of how to govern such stores of information and the processes connected with them. This truly international volume offers new insights from a range of disciplinary perspectives and will be essential reading for policy makers and scholars across a range of social sciences.
Rapid technological advances, the establishment of large-scale biobanks, and the exchange of data across international boundaries raise a variety of questions for regulators struggling with the problem of how to govern such stores of information and the processes connected with them. This truly international volume offers new insights from a range of disciplinary perspectives and will be essential reading for policy makers and scholars across a range of social sciences.
Jane Kaye is Wellcome Trust Fellow in Medical Law at the Ethox Centre, University of Oxford, UK Mark Stranger has taught sociology and worked as Senior Research Fellow and Executive Director at the Centre for Law and Genetics, University of Tasmania, Australia. He is the author of Surfing Life: Surface, Substructure and the Commodification of the Sublime.
Inhaltsangabe
List of Figures and Table Notes on Contributors Acknowledgements Governing Biobanks: An Introduction Part 1. Benefit Sharing 1. What Benefit Sharing Arrangements do People Want from Biobanks? A Survey of Public Opinion in Australia 2. Reconsidering Altruism Introducing Reciprocity and Empowerment in the Governance of Biobanks 3. From Benefit Sharing to Power Sharing: Partnership Governance in Population Genomics Research Part 2. Consent 4. Co-determination of Donors in Biobanks 5. Developing an Appropriate Consent Model for Biobanks: In Defence of 'Broad' Consent 6. Consent by Research Ethics Committees: The New Law on Biomedical Research in Spain 7. Addressing the Ethical Objections to Pediatric Biobanks 8. Deciding Whether to Participate in a Biobank: The Concerns of Healthy Volunteers Part 3. Privacy and Access 9. Privacy Interests in Biobanking: A Preliminary View on a European Perspective 10. Feeding back Significant Findings to Participants and Relatives 11. Ensuring Participant Privacy in Networked Biobanks 12. hSERN: A Tool to Help Researchers with the Legal Requirements of Cross-border Exchange of Biological Material 13. Biobanking Networks - What are the Governance Challenges? Part 4. Governing Bodies 14. Potential Conflicts in Governance Mechanisms used in Population Biobanks 15. UK Biobank Ethics and Governance Council: An Exercise in Added Value 16. The End of Individual Control Over Health Information: Promoting Fair Information Practices and the Governance of Biobank Research 17. From Public Inquiry to Policy: Biobanks Population Genetics and the Public Interest Index
List of Figures and Table Notes on Contributors Acknowledgements Governing Biobanks: An Introduction Part 1. Benefit Sharing 1. What Benefit Sharing Arrangements do People Want from Biobanks? A Survey of Public Opinion in Australia 2. Reconsidering Altruism Introducing Reciprocity and Empowerment in the Governance of Biobanks 3. From Benefit Sharing to Power Sharing: Partnership Governance in Population Genomics Research Part 2. Consent 4. Co-determination of Donors in Biobanks 5. Developing an Appropriate Consent Model for Biobanks: In Defence of 'Broad' Consent 6. Consent by Research Ethics Committees: The New Law on Biomedical Research in Spain 7. Addressing the Ethical Objections to Pediatric Biobanks 8. Deciding Whether to Participate in a Biobank: The Concerns of Healthy Volunteers Part 3. Privacy and Access 9. Privacy Interests in Biobanking: A Preliminary View on a European Perspective 10. Feeding back Significant Findings to Participants and Relatives 11. Ensuring Participant Privacy in Networked Biobanks 12. hSERN: A Tool to Help Researchers with the Legal Requirements of Cross-border Exchange of Biological Material 13. Biobanking Networks - What are the Governance Challenges? Part 4. Governing Bodies 14. Potential Conflicts in Governance Mechanisms used in Population Biobanks 15. UK Biobank Ethics and Governance Council: An Exercise in Added Value 16. The End of Individual Control Over Health Information: Promoting Fair Information Practices and the Governance of Biobank Research 17. From Public Inquiry to Policy: Biobanks Population Genetics and the Public Interest Index
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